Health and Fitness · Lifestyle

What it is Really Like Having an Autoimmune Disease and Other Digestive Disorders

It has taken me some time to think about writing this post because, well, we’re all vulnerable at some point and I feel like this is how this post is. It’s raw. It’s real. But mostly, it is a daily reality for me and my family.

I have 5 digestive disorders that cause a daily struggle. Not so much a struggle that I can’t function or complete my daily routine like work and mom life. But enough that it can be uncomfortable or not as easy as it should be. I start each day not knowing what the day will bring or constantly being on guard with any symptoms that may arise.

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Here’s the back story: about 10 years ago I was diagnosed with gastroparesis. Which is a fancy medical term for food digesting at a much slower than normal rate. This causes my food to sit in my stomach which makes me feel full quicker and longer, so I don’t eat a whole lot. Foods that bother this more are generally foods that should be healthy: fruits, vegetables, beans, dairy, along with some others. I treat this as much as I can without medicine by eating small meals and avoiding the foods mentioned above as best I can.

Because gastroparesis has caused such damage to my stomach, I now have a hiatal hernia. This means where your esophagus and stomach meet, there’s a sphincter that opens and closes when food or drink enters the stomach. My stomach goes into my esophagus which causes odd discomfort and pain along with a nice bulge to go with it. My doctor believes this was caused from throwing up so much before I was diagnosed and treated from gastroparesis. This also causes GERD which is an acronym for gastroesophageal reflux disease or in simple terms heart burn/ acid reflux. Tums are my trusted companion.

To go along with the mentioned digestive disorders, I also have Celiac Disease. This is an autoimmune disease that causes my body to attack itself whenever any form of gluten is consumed. The only way to treat this is keeping to a strict gluten free diet. This has changed my dietary needs completely and in addition to having gastroparesis, it was a great learning curve for me to learn about food in a whole different manner. Celiac Disease has definitely affected every part of my life because any little form of gluten can trigger an autoimmune response. So being careful with everything I eat, drink, wear, etc. is extremely important and it feels like a full-time job.

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So in addition to my crazy digestive issues, I have created a list of what it’s really like for me trying to just make it through each day:

  • Questioning if I should eat because (1) it’ll instantly make me sick (2) razor sharp pains in my stomach and intestines for the remainder of the day and days to follow (3) over eating = throwing up, indigestion so bad- why bother (4) is there a bathroom nearby? because IBS just kicked in (5) a crumb of gluten- yeah this won’t end well (6) you thought a salad was healthy and a good option… nope, sick for days (7) the stomach spasms will either keep me up at night or cause total discomfort all day
  • Waking up extra early in the morning for a lovely workout actually turning into being stuck in the bathroom for that time frame
  • Or your joints hurt so bad that working is more torturous than it should be
  • Leaving my screaming kids in the car because “duty calls” and we end up missing church or whatever else we’re attempting to go to
  • Grocery shopping and reading Every. Single. Label, every time because you never know when your favorite item may have changed their ingredients
  • Wishing I could stop at any restaurant at any time for a snack or dinner but not anymore. Gluten rules the world. And not in a good way. This includes fun things like going out to Friday night happy hour.
  • Joint pain because my body attacks itself whenever it feels like it (autoimmune response). Even writing with a pen hurts…
  • Random nausea whenever my stomach feels like it
  • Being so bloated my normal clothes don’t fit so keeping a few items that are bigger help hide the bloat
  • Skin rash on my elbows and back of my head causing me to itch so bad. This is caused from Celiac rash called Dermatitis Herpetiformis
  • Having to write down everything because brain fog is real
  • Having the weirdest type of exhaustion; it’s the worst exhaustion I’ve ever dealt with
  • Wishing I could enjoy a warm cup of coffee each morning but it just doesn’t agree with me 
  • Constantly worrying about how I am going to feel or how the day will go because of the many symptoms that can suddenly arise
  • Wondering how my digestive issues are affecting my family. This worries me the most!

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Most days are good. But the bad days are what make normal activities difficult to do. Plus I have learned to hide the pain or learn to deal with it so I don’t miss out on anything. It has been an adjustment with learning how to deal with all the issues I have with my stomach. And I know I am not the only one out there struggling with trying to get by each day symptom free! This is why we are called, warriors. 💚

Be well,

Kassandra

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Have more questions regarding the digestive disorders I mentioned? Read more on them by clicking on the links provided below.

Celiac Disease

Gastroparesis

GERD- Gastroesophageal Reflux Disease

Hiatal Hernia

IBS- Irritable Bowel Syndrome

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